Diritto Pubblico Comparato ed Europeo

Sommario

1. Introduction. – 2. Beginning of life issues. – 2.1. The Evans case – implanting frozen embryos after the couple separated. – 2.2. The Hashmi/Quintavalle case – creating a “saviour sibling”. – 3. End of life issues. – 3.1. End of life issues – children. – 3.2. End of life issues – adults. – 4. Consultations by the Human Fertilisation and Embryology Authority. – 4.1. The Human Fertilisation and Embryology Authority’s consultation to allow women to donate eggs to research projects. – 4.2. The Human Fertilisation and Embryology Authority’s consultation on hybrids and chimeras. – 5. The Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006. – 6. Forensic uses of genetic data. – 7. Data protection and freedom of information issues relating to medical information. – 8. Biobanks. – 8.1. Recruitment. – 8.2. Consent. – 8.3. Confidentiality. – 8.4 Feedback. – 8.5. Withdrawal. – 9. Conclusion.

Abstract

This paper will provide an overview of the recent developments in biolaw in the UK. Of interest in this connection are beginning life decisions, where the widely publicised Evans case will be discussed, as well as the controversial saviour sibling issue. The next topic is end of life decisions in the case of children and adults. First, the case of Charlotte Wyatt will be examined, which has earned considerable press coverage, as well as several other cases and a consultation by the Nuffield Council on Bioethics. End of life decisions regarding adult patients will focus on the case of Mr Burke, who, suffering from cerebellar ataxia, demanded not to have artificial nutrition and hydration withdrawn. Next, the most recent consultation by the Human Fertilisation and Embryology Authority will be introduced, namely the consultation on allowing women to donate their eggs for research and the consultation about the use of hybrids and chimeras in research. Further, human tissue legislation which only came into force recently will be discussed, before the latest developments in data protection and freedom of information regarding health data is examined. Finally, several aspects concerning biobanks, such as recruitment, consent and confidentiality will be analysed.